Thursday, February 20, 2014

*******RARE DISEASE DAY 2-28-2014*******





Rare Disease Day 2014


Rare Disease Day is an observance held on the last day of February to raise awareness for rare diseases and improve access to treatment and medical representation for individuals with rare diseases and their families. The awareness-raising event coordinated by EURORDIS at the international level and by National Alliances and Patient Organizations at the national level.

"The main objective of Rare Disease Day is to raise awareness amongst the general public and decision-makers about rare diseases and their impact on patients' lives.

The campaign targets primarily the general public but it is also designed for patients and patient representatives, as well as politicians, public authorities, policy-makers, industry representatives, researchers, health professionals and anyone who has a genuine interest in rare diseases.

Since Rare Disease Day was first launched by EURORDIS and its Council of National Alliances in 2008, more than 1000 events have taken place throughout the world reaching hundreds of thousands of people and resulting in a great deal of media coverage". You can find out more: http://www.rarediseaseday.org/article/what-is-rare-disease-day

We encourage every single one of You to participate and help raise awareness about porphyria.  We together are making a big difference in educating the public and medical professionals about the disease and helping each other to overcome the difficulties with a smile and enthusiasm.

Be proactive and be heard! You are welcome to attract as much media attention as possible. Ask your local newspaper or community newsletter to include a story about you and porphyria or just write an article on your experience or change your profile picture on facebook. You can be involved in any way that works with your schedule, resources, community, and interests!


"Remember.... Research is the key to your cure!"

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